Getting frustrated..(venting)

[JustDucky]

Hi all...I have been home from the hospital a little over two weeks after being treated aggressively with IV antibiotics for a total of 8 weeks for my recurring B. cepacia pneumonia. Before I was discharged, I had a bronch which showed very little cepacia but also steno maltophilia in my lungs, it was as good as the docs could get it. Well, now I am starting to feel junky again, I can taste the cepacia (eww, I know, gross but true) and when I change my innercannula of my trache, I can smell it too. Headaches and sweats are back, my sputum is starting to get thicker. It is only a matter of time before I wind up back on the IV's...I give it about two weeks tops. Thankfully my doc is coming to the house on Monday to see what's up with me (Yes, she actually does house visits...maybe I will dress up as a mummy, that should look interesting with all of my tubes and vent LOL!!!!) . There is really nothing I can take PO for it as I am allergic to Bactrim, Cipro and Levaquin, all of the good ones the docs could give me (actually, I am allergic to 14 meds, 8 of them antibiotics) I am praying that my Medicaid goes through soon, they cover IV's at home...Medicare doesn't, that's why I have to go to club med so much and for so long.
I did go out today as I felt somewhat okay, I figure on the days I feel half way decent, I will get out...how I feel can change drastically from day to day, so I take advantage of those good days. I don't push myself, but boy do I get tired just from going anywhere...I am in a wheelchair most of the day and a vent does all of the work of my breathing, why should I get so damn tired????LOL!
My mom has been trying to get me to eat more...my appetite isn't great, thankfully I have some extra pounds to spare but I am losing weight steadily. I don't know about you guys, but when you can taste the bacteria, anything you eat tastes just like the bacteria...not reallly an appetite booster.
Tomorrow, my kids are going to the haunted house that they helped with in our community, as long as I am not in too bad of a shape, I will be there to see them go through it...I know they worked so hard on it, my camera will be ready!!!
Well, enough about my rambling...I am sure many of you have been through this, that is why I feel so comfortable sharing this saga with all of you.
Hugs to all of you, Jenn <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[JennifersHope]

Hi Jenn,

I am sorry that you don't feel good again.. I know how discouraging that is...... I can especially relate today, after being up all night in severe joint/muscle pain....for no apparent reason other then my lovely graham cracker bones.... anyway......

I just wanted to let you know you are not alone.... I do hope that your medicaid comes through soon... doing at home IVS makes all the difference in the world...and I am going to pray that you get to go to your kids haunted house. You are such a trooper and an inspiration to so many ppl. Hang in there and know you are cared about a lot.

Let us know how you are doing,

Jennifer

 

[anonymous]

Jenn,

Sounds like a very frustrating situation you are in. Is there talk of a lung transplant for you?
There are several centers that do lung tx for those with Cepacia, and just from what you describe, I would want new lungs to get a new life.

Joanne Schum
luckylungsforjo@aol.com

 

[anonymous]

Wow you are truly going thru a lot but you are so wonderful to be there for your kids. Despite everything else you are facing (that isn't pretty) you are still a good mother! That is wonderful. I know a lot of "healthy" moms who don't even act like that!
I don't know much about Cepacia. Do you just get it from being around other CF'ers? It sounds horrible and very complicating. You need to vent as much as possible. Don't hold that stuff in...you'll blow up!
Good luck Jenn and hang in there!
Love,
A fellow CF'er

 

[JustDucky]

Thank you all for being there (((((((everyone))))), you don't know how much this means to me. I try to be strong, it is so hard sometimes as all of you well know as you have faced your own obstacles. I believe either we sink or swim, I will swim for the sake of myself and my kids. I love being with them, they are my life...I just wish that they would stop growing for awhile! They are 11 and 13 now...I remember holding them after they were born like it was yesterday. I just want to be there for them as much as possible...I know I can't run and play softball with them, but I can watch them play, help them with their homework, and just be there for them on their good days and bad.

Joanne, I am not eligible for a transplant because I have rare form of muscular dystrophy that didn't become apparent until I was about 30. I was just diagnosed with CF a few months ago, apparently I had a mild mutation. Docs just thought it was asthma. My diaphragm no longer functions on its own, so the ventilator does the work for me. It has been about a year since going on the vent, Nov 1st of last year was when I was placed on it. I was so scared, it would mean a whole new way of living, but I am here!!

Fellow CF'er, Burkholderia cepacia is a bacteria related to the pseudomonas family, people who have normal lungs dont get this bug...it lives everywhere just like the pseudo, but with our lungs, we are more susceptible to these type of infections. I cultured cepacia in April and have been through countless IV's because of it, it is very resistant to many antibiotics and with all of my allergies, it makes it very difficult to treat. Many centers actually segregate those with cepacia from non cepacia folks because it seems that cepacia can be transmitted to other CF'ers.

Jenn, I hope you get relief from those aching bones....my bones don't bother me, I do have osteopenia, not osteoporosis, but I get severe muscles spasms from my dystrophy problems and have to take Valium and Baclofen to help that. The docs have finally figured out the right dosages, so I am not in pain all of the time anymore. I am praying so hard that the Medicaid comes through okay, I have high medical expenses related to my vent, so the social worker thinks that it may happen. Crossing my fingers!!!

You guys may not know it, ,but you have truly inspired me as well....we are all fighting such a battle and I sense the strong hearts that you all have. Many hugs, Jenn <img src="i/expressions/face-icon-small-smile.gif" border="0">